Guest guest Posted October 30, 2004 Report Share Posted October 30, 2004 No - We were doing ACTH injections before the diet - he was on no other meds while doing that treatment. The injections worked - he was 26 days seizure free and they came back more and stronger than ever - We have tried many other meds - none of them even touched his seizures - so we are praying he will take to the diet and it will work. He is on the highest keytone level on the sticks we use - so I do not know if he is too ketotic? How to know besides the ketostick? I thought I might have needed the ketosticks with the glucose reading - I didn't get those (they cost more ) and they did not recommend them - Thanks for the tips and I thank God for the support!! I have felt so lost for over a year now - glad to get connected!! Re: new on the diet- Hi , Is Zaki on any medications? Blood shot eyes here usually meant toxicity, which can occur after starting the diet - med levels can change (go up) once the kiddie is established in ketosis, and even if not reflected blood level wise, in other ways it can become fairly obvious - thru sleepiness, increased seizures etc. However, that aside, legarthy is fairly common at the beginning of the diet, their little metabolisms are going thru a fairly major change, so it may be solely from that - it takes some children a week or two to fully adjust. The other thing to watch for if he is irritable is well, is that his ketones haven't gone too high, or that his glucose isn't still too low. Glucose levels wil naturally be a lot lower on keto than if not, but there is still a point at which they can become hypoglycemic, and legarthy would also result if that were the case. So they are some things to keep an eye on, med toxicity, excess ketosis, and hypoglycemia for legarthy, but like I said, it may just be a case of his metabolism getting used to 'running' on ketones, in which case it should settle down on it's own, ----- Original Message ----- From: jcksnhthr Hello All: My name is mother of Zaki 17months. We just got home from the hospital yesterday - We started our fasting last Sunday. He had quite a hard time at the hopital first with blood sugar, then dehydration, then he had an allergic reaction two days in a row - we believe to the mira-lax. He had a hard time wanting to eat anything at all. We are home now and he is doing a little better. I am trying to figure out many of the tools available myself - I noticed the dietician at the hospital we went to (she has never directly done the diet) Told me the wrong way to do the meal plan worksheet. I re- weighed one of the meals that they brought up and the it was off over 6 grams on different items needless to say I am finding it necessary to reach out to people familiar with this diet. My main question right now - is how long does it take for Zaki to get his energy level back. He is still so lathargic and irritable. Both of which are uncharacteristic of him. His eyes are blood shot red also? PS never have done a list serve - so please bear with me as I figure out how to navigate around. Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2004 Report Share Posted October 30, 2004 Hi , Is Zaki on any medications? Blood shot eyes here usually meant toxicity, which can occur after starting the diet - med levels can change (go up) once the kiddie is established in ketosis, and even if not reflected blood level wise, in other ways it can become fairly obvious - thru sleepiness, increased seizures etc. However, that aside, legarthy is fairly common at the beginning of the diet, their little metabolisms are going thru a fairly major change, so it may be solely from that - it takes some children a week or two to fully adjust. The other thing to watch for if he is irritable is well, is that his ketones haven't gone too high, or that his glucose isn't still too low. Glucose levels wil naturally be a lot lower on keto than if not, but there is still a point at which they can become hypoglycemic, and legarthy would also result if that were the case. So they are some things to keep an eye on, med toxicity, excess ketosis, and hypoglycemia for legarthy, but like I said, it may just be a case of his metabolism getting used to 'running' on ketones, in which case it should settle down on it's own, ----- Original Message ----- From: jcksnhthr Hello All: My name is mother of Zaki 17months. We just got home from the hospital yesterday - We started our fasting last Sunday. He had quite a hard time at the hopital first with blood sugar, then dehydration, then he had an allergic reaction two days in a row - we believe to the mira-lax. He had a hard time wanting to eat anything at all. We are home now and he is doing a little better. I am trying to figure out many of the tools available myself - I noticed the dietician at the hospital we went to (she has never directly done the diet) Told me the wrong way to do the meal plan worksheet. I re- weighed one of the meals that they brought up and the it was off over 6 grams on different items needless to say I am finding it necessary to reach out to people familiar with this diet. My main question right now - is how long does it take for Zaki to get his energy level back. He is still so lathargic and irritable. Both of which are uncharacteristic of him. His eyes are blood shot red also? PS never have done a list serve - so please bear with me as I figure out how to navigate around. Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2004 Report Share Posted October 30, 2004 Hi ! I don't have a lot of advice for you - we've only been on the diet a week longer than you have! We are being cared for out of s Hopkins, so I do feel like I have a good support system in place and this site - I can't tell you how helpful it's been already! Our dietician had us by multi-sticks instead of just keto sticks. They did cost us almost $100 for 100 sticks, but they measure for so much - specifically we monitor ketones (if they are turning the darkest color REALLY quickly, I think that may be a sign that he is too ketonic - others will advise you on that, I'm sure!), specific gravity (for dehydration), blood in the urine (a symptom of possibly kidney stones or bladder infections), and glucose. We test once a day and it is worth the $100 for the peace of mind I have. is not yet verbal, so I don't know if he could tell me other than screaming if he was having problems. What's Zaki's ratio, calories, fluid allotment? Maybe we can exchange receipes! is 4:1, 800, and 1000mls. Have you seen any seizure control yet? I've been told that it can take some time to see any and all results. It's been a hectic week at home for me - getting used to everything, so be prepared for that! I wish you a lot of luck and hope keto is the answer for Zaki! Leigh > No - We were doing ACTH injections before the diet - he was on no other meds while doing that treatment. The injections worked - he was 26 days seizure free and they came back more and stronger than ever - We have tried many other meds - none of them even touched his seizures - so we are praying he will take to the diet and it will work. He is on the highest keytone level on the sticks we use - so I do not know if he is too ketotic? How to know besides the ketostick? I thought I might have needed the ketosticks with the glucose reading - I didn't get those (they cost more ) and they did not recommend them - Thanks for the tips and I thank God for the support!! I have felt so lost for over a year now - glad to get connected!! > > Re: new on the diet- > > > Hi , > Is Zaki on any medications? Blood shot eyes here usually meant toxicity, which can occur after starting the diet - med levels can change (go up) once the kiddie is established in ketosis, and even if not reflected blood level wise, in other ways it can become fairly obvious - thru sleepiness, increased seizures etc. > However, that aside, legarthy is fairly common at the beginning of the diet, their little metabolisms are going thru a fairly major change, so it may be solely from that - it takes some children a week or two to fully adjust. > The other thing to watch for if he is irritable is well, is that his ketones haven't gone too high, or that his glucose isn't still too low. Glucose levels wil naturally be a lot lower on keto than if not, but there is still a point at which they can become hypoglycemic, and legarthy would also result if that were the case. > So they are some things to keep an eye on, med toxicity, excess ketosis, and hypoglycemia for legarthy, but like I said, it may just be a case of his metabolism getting used to 'running' on ketones, in which case it should settle down on it's own, > > > ----- Original Message ----- > From: jcksnhthr > > > Hello All: > My name is mother of Zaki 17months. We just got home > from the hospital yesterday - We started our fasting last Sunday. He > had quite a hard time at the hopital first with blood sugar, then > dehydration, then he had an allergic reaction two days in a row - we > believe to the mira-lax. He had a hard time wanting to eat anything > at all. We are home now and he is doing a little better. I am trying > to figure out many of the tools available myself - I noticed the > dietician at the hospital we went to (she has never directly done the > diet) Told me the wrong way to do the meal plan worksheet. I re- > weighed one of the meals that they brought up and the it was off over > 6 grams on different items needless to say I am finding it necessary > to reach out to people familiar with this diet. My main question > right now - is how long does it take for Zaki to get his energy level > back. He is still so lathargic and irritable. Both of which are > uncharacteristic of him. His eyes are blood shot red also? > PS never have done a list serve - so please bear with me as I figure > out how to navigate around. > Blessings, > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi , K, so that is good you don't have any AEDs involved whilst finetuning, that will make life a lot easier, especially in these early stages. The dual ketosticks that I think you are talking about that measure glucose in the urine are not actually any use really on keto, the kiddies should never be at a point where any glucose spills into the urine, those ones are designed more for diabetics. It is actually a blood monitor (fingerprick test kit) that you need to check both blood and glucose levels, this will tell you exactly how high the ketones are going, and how often they are going up. It will also tell you if hypoglycemia is involved in the legarthy you have been seeing. How is his actual seizure control, and is his energy level picking up now? In a week or 2 you should start to get some indication on the scales weight wise to help you figure out whether his calories are set in an ok place. If his urines ketones are always on the darkest reading, then it is doubtful his calories are too low, they are more likely to be on the low side, (often caused by body fat being burnt in conjunction with caloric fat intake which also produces ketones) so possibly a cal increase might be needed if those high readings continue for too much longer. Depends on his weight/growth though, if this looks to be staying in the right place, then it may be that he is one who can get away with (even need) a lower ratio. I would confirm his blood ketone (bhb) level via blood testing before making at any changes at this stage though, and it is still early days - it can take quite a while for them to settle down in the state of ketosis and for you to get a definite idea of where his ketones are going to settle at. ----- Original Message ----- From: HEATHER JACKSON No - We were doing ACTH injections before the diet - he was on no other meds while doing that treatment. The injections worked - he was 26 days seizure free and they came back more and stronger than ever - We have tried many other meds - none of them even touched his seizures - so we are praying he will take to the diet and it will work. He is on the highest keytone level on the sticks we use - so I do not know if he is too ketotic? How to know besides the ketostick? I thought I might have needed the ketosticks with the glucose reading - I didn't get those (they cost more ) and they did not recommend them - Thanks for the tips and I thank God for the support!! I have felt so lost for over a year now - glad to get connected!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 The diet tends to not work when there is an illness. After it is past, the diet should start working again. Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Thank you - Yes I asked the doc about the ketosticks with glucose and he said the same thing as you. He was having close to 100 seizures a day and it was down to 7 on Saturday! (about 5 days after introducing solid food) yippeee! - He was so lethargic and irritable the doc said to give a little extra carb on Sunday - I did this and only in one meal and he has already had 16 this morning (monday) and it is barely 8am here. So today I will add no extra carbs and stick to the diet precisely - I was seeing some control after all - I was just so concerned about him not sleeping, lethargy , irritable etc. I am going to check on the fluids today too - they said there are no fluid restrictions with the altitude in CO, but I do not know the minimum amount he should be getting - I have a tippee cup in his mouth the entire time he is not eating seems like. I will let the doc know I want the blood monitor. His energy level is the same - none - but I think he has a little virus - his nose is running and low grade fever? Eyes still blood shot and a very fine bumpy rash along his tummy? I will let you know how he does over the next couple of days - poor babe! we weigh him this Friday! Re: new on the diet- Hi , K, so that is good you don't have any AEDs involved whilst finetuning, that will make life a lot easier, especially in these early stages. The dual ketosticks that I think you are talking about that measure glucose in the urine are not actually any use really on keto, the kiddies should never be at a point where any glucose spills into the urine, those ones are designed more for diabetics. It is actually a blood monitor (fingerprick test kit) that you need to check both blood and glucose levels, this will tell you exactly how high the ketones are going, and how often they are going up. It will also tell you if hypoglycemia is involved in the legarthy you have been seeing. How is his actual seizure control, and is his energy level picking up now? In a week or 2 you should start to get some indication on the scales weight wise to help you figure out whether his calories are set in an ok place. If his urines ketones are always on the darkest reading, then it is doubtful his calories are too low, they are more likely to be on the low side, (often caused by body fat being burnt in conjunction with caloric fat intake which also produces ketones) so possibly a cal increase might be needed if those high readings continue for too much longer. Depends on his weight/growth though, if this looks to be staying in the right place, then it may be that he is one who can get away with (even need) a lower ratio. I would confirm his blood ketone (bhb) level via blood testing before making at any changes at this stage though, and it is still early days - it can take quite a while for them to settle down in the state of ketosis and for you to get a definite idea of where his ketones are going to settle at. ----- Original Message ----- From: HEATHER JACKSON No - We were doing ACTH injections before the diet - he was on no other meds while doing that treatment. The injections worked - he was 26 days seizure free and they came back more and stronger than ever - We have tried many other meds - none of them even touched his seizures - so we are praying he will take to the diet and it will work. He is on the highest keytone level on the sticks we use - so I do not know if he is too ketotic? How to know besides the ketostick? I thought I might have needed the ketosticks with the glucose reading - I didn't get those (they cost more ) and they did not recommend them - Thanks for the tips and I thank God for the support!! I have felt so lost for over a year now - glad to get connected!! Quote Link to comment Share on other sites More sharing options...
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